Why does it seem like their autism is getting worse when they hit puberty?

Something happens when children turn into teenagers. They go from demanding  your attention to wanting their independence. For those on the spectrum, it may look like non-compliance; they don’t seem to want to follow through on your requests anymore. As a parent  it may be hard to appreciate, but  this is a necessary development. Being appropriately non-compliant  is a positive step towards self-advocacy. However, it is important to differentiate between appropriate teenage non-compliance, and problem behaviors that must be stopped.   As a parent  it’s important to support your teen as he struggles to  become his own person.

When tweens  on the spectrum go through puberty and hit the teen years, they also have the same hormones acting up as the neurotypical teens, and they feel the need to be more independent, only they don’t have the same outlets as neurotypicals to show their independence. Thus we see more defiant and on-compliant behavior.

Neurotypical teens are able to communicate to us that they are needing independence, they need more time away from their parents, and more choice over how they will spend their time. Sometimes they start acting up by staying out later than a pre-established curfew, go to parties, and get into environments where they have to make choices about their behavior. They usually have friends, and start negotiating with us  to change our house rules in  regards to their social outings. At school, they are involved in small group project or on sports teams and they get to make choices that effect the team.

For example, my daughter, Rebecca, loves alternative rock concerts, and has been asking to attend them since she was 11 years old. Now, at 17, the rules have changed in regards to attending concerts. When she was 11, she could go on a weekend night with a few friends if there was a trusted parent who went with them and stayed with them the whole time, and she had to be home at a certain time.  Now at 17, she is allowed to stay out later, does not have to have an adult accompany her, and at times can go during the week, depending on school and sport schedule.  The rules changed because as she got older, Rebecca argued her case to us, her parents, about why she should be allowed to stay out later, and to show her responsibility.

Pre-teens and teens with autism, however, don’t usually negotiate or tell their parents they need more space, even if they are verbal. They rarely have opportunities outside the home with other teens that are testing their parents authority. Yet, they have the same hormones and the same urge to have more freedom. This leads to non-compliance – which is never any fun for those involved.

In my next post, I’ll give you some autism parenting tips on how to provide your teen or student with more freedom or more space. Meanwhile,  you may want to consider signing up for my course on Adolescents on the Autism Spectrum.

Tips on helping your child and teen with autism make friends

On an earlier post, I discussed why it is hard for children and teens to make friends.  Relationships  are important, but difficult for many on the spectrum. With help they can learn some social skills that will allow a connection with others to be made on which to form a friendship. Here are some autism parenting tips on how to help them in this area:

  • Connect with the child by playing with what he wants to play with, and in the way he is playing with it.
  • Teach him turn taking skills using the toys or objects he is interested in, and then try some simple games.
  • If the lack of eye contact is getting in the way, suggest that the person on the spectrum focus on the ear of the person they are   conversing with.  To the conversation partner, it will look like they are making eye contact.
  • Teach social skills to the level possible. Teach about body language and  social cues. Think of how foreigners in a strange land don’t understand the local customs and have to  learn them: it is the same for a person with Asperger’s and neurotypical body language and social cues.
  • Teach wherever possible beginning and ending conversations and what kind of topics to bring up. Practicing them in a small group with peer tutors or buddies is a great way to get used to using them.
  • Find special interest groups where they can discuss the topic they are passionate about at length.  For example, if they are into Legos, trains,  or Star Trek, find a local club that is based on that interest. Then limit the conversation on that topic to  specifically scheduled times and to the club, by reminding them they can talk about it then.

For more information and autism parenting tips on teens and relationships, read  my book Adolescents on the Autism Spectrum, or sign up for my course on Adolescents on the Autism Spectrum.

How can we help our children and teens with autism make friends?

From the neurotypical person’s  point of view, it seems as if children, teens and adults on the autism spectrum are not interested in having friends.   They do not show the same type of social cues or social behaviors and body language that indicates to others that  they want to have a relationship. The adults I have interviewed make it clear they enjoy having relationships, including those who are mostly non-verbal such as Sue Rubin (“Autism is a World”).  My son Jeremy often communicates about wanting to have friends.  However, understanding the concept of  different types of relationships and knowing the appropriate behaviors and conversations expected from the neurotypical viewpoint, does not come naturally, and can be magnified for those who are non-verbal.

Ways in which it is difficult for them to make friends:

  • Many children on the spectrum are good at playing alongside, but not with, peers. They may be fascinated with a toy, but not play with it in the way it is meant to be played with, which means that peers may not connect with him.
  • Games are difficult. They need to learn turn taking and waiting.
  • They may be very interested in certain objects or past times that are not usual for the developmental level
  • They have a hard time making eye contact (as discussed elsewhere), and for many neurotypicals, eye contact is important and if you do not make eye contact then you appear rude or shifty.
  • Children and  teens may have poor social skills.
  • They are not good at picking up on non-verbal communication skills, such as social cues and body language, and this makes it hard for establishing a relationship. Those who are non-verbal may have communication systems that are limited and unfamiliar to neurotypicals.
  • Many who are verbal are not good at social chit chat and are frankly not interested in it because they don’t get the point of it. Often they have difficulties starting and ending conversations, or only want to speak on topics they are passionate about.

In my next post I will discuss  tips on how you can help your child  learn skills that will help him / her  have meaningful friendships.

For more information and autism parenting tips on teens and relationships, read my book Adolescents on the Autism Spectrum, or sign up for my course on Adolescents on the Autism Spectrum.

Puberty brings changes that are difficult for a teen on the spectrum

Most children with autism have a terrible time with change. They like things to stay the same, as they are used to the familiarity of routine. If there are no new things, they don’t have to anticipate for any ‘attacks’ to their senses; they can anticipate what is coming next.  Many like things to be the same and will spend time lining up their toys or objects. Some parents have reported that when they have moved the furniture around, the child will move it back to where it used to be.

Now, imagine that you are the type of person who cannot stand change, that you are afraid of it.  And then you notice something really freaky – your body is changing on you and you have no control over it. It is even worse if no one has told you what was going to happen. Boys start noticing the hair on their legs growing in tougher and longer, and hair sprouting in places there wasn’t any before. Then, they notice their Adam’s Apple has grown and become more prominent, and their voice is starting to change and is cracking at times. Not only that, but something weird is happening ‘down there’ – their penis gets hard and sometimes there is a liquid leaking out. How weird is that??!!
For girls, it is much the same – think of  all the ways a girl’s body changes, and imagine how frightful that could be if you don’t like change.  Especially when the girl begins to menstruate, if no one has explained to her in a way she can understand what that is all about, then she will have a difficult time going through this change towards womanhood.

Some tips:

  • It is best to start explaining to the preteen what bodily changes to expect before puberty hits. For girls, puberty usually starts at age 9 or 10, for  boys at 10 or 11.  However, better late than never.
  • Explain what will happen to both the male and female bodies during puberty, so that the child is not surprised when they see their peers changing as well.
  • Show pictures of trusted , loved adults of both sexes – mom, dad, aunt, uncle – as babies, then children, then teens, then  as adults, so that they see how the transformation has happened to everyone, and that it is a positive thing to go through.
  • Explain the bodily function inherent to being a boy (hardening of the penis, ejaculation) and being a girl (menstrual cycle).If you have a girl on the spectrum, it might be a wise idea to have her wear a pad for a while before she begins her menstrual cycles, so that she gets used to the sensory aspect of wearing the sanitary pad.
  • The use of social stories and a picture book you can create with the above information is helpful. You can then go over the picture book and social stories as often as needed.

The point is, body changes are scary for those who do not like change, but by telling them and showing them the changes that will happen can make it much easier for them. For more autism parenting tips when it comes to teens, you may wish to sign up for our course, Adolescents on the Autism Spectrum. Also, you can read Adolescents on the Autism Spectrum, or 41 Things to Know About Autism.

Growing Up With Autism

Teenagers and young adults are the emerging face of autism as the disorder continues to challenge science and unite determined families.

By Barbara Kantrowitz and Julie Scelfo


Nov. 27, 2006 issue – Chicken and potatoes. Chicken and potatoes. Danny Boronat wants chicken and potatoes. He
asks for it once, twice … 10 times. In the kitchen of the family’s suburban New Jersey home, Danny’s mother,
Loretta, chops garlic for spaghetti sauce. No chicken and potatoes, she tells Danny. We’re having spaghetti. But
Danny wants chicken and potatoes. Chicken and potatoes. His 12-year-old sister, Rosalinda, wanders in to remind her
mother about upcoming basketball tryouts. His brother Alex, 22, grabs some tortilla chips and then leaves to check
scores on ESPN. His other brother Matthew, 17, talks about an upcoming gig with his band. Danny seems not to
notice any of this. “Mom,” he asks in a monotone, “why can’t we have chicken and potatoes?” If Danny were a
toddler, his behavior would be nothing unusual. But Danny Boronat is 20 years old. “That’s really what life with autism
is like,” says Loretta. “I have to keep laughing. Otherwise, I would cry.”

Autism strikes in childhood, but as thousands of families like the Boronats have learned—and thousands more are
destined to learn—autism is not simply a childhood disorder. Two decades into the surge of diagnoses that has made
autism a major public health issue, a generation of teenagers and young adults is facing a new crisis: what happens

As daunting as that question may be, it’s just the latest in the endless chain of challenges that is life for the dedicated
parents of children with autism. Twenty years ago, they banded together—largely out of desperation—to raise
awareness of a once rarely diagnosed, often overlooked disease. They are united by the frustration of dealing with a
condition that has no known cause and no cure. They have lobbied passionately to get better education for their kids
and more money for research into autism, a neurological disorder characterized by language problems, repetitive
behaviors and difficulty with social interaction. At the same time, more sophisticated epidemiology has revealed the
true magnitude of the problem. Autism is now estimated to affect from one in 500 to one in 166 children—or as many
as 500,000 Americans under 21, most male. That includes individuals with a wide range of abilities—from socially
awkward math whizzes to teens who aren’t toilet trained—but who all fit on what scientists now consider a spectrum
of autism disorders.

The culmination of much of this parental activism is the Combating Autism Act, which was pushed by a collection of
advocacy groups like Cure Autism Now, led by Hollywood producer Jon Shestack and his wife, Portia Iverson; Autism
Speaks, started by Bob Wright, CEO and chairman of NBC Universal, and the Deirdre Imus Environmental Center for
Pediatric Oncology. The bill unanimously passed the U.S. Senate in August but was blocked in the House by Texas
Republican Joe Barton, chair of the House Committee on Energy and Commerce. In a September meeting, Barton told
autism activists that he would continue to oppose their legislation, which earmarks $945 million for research over the
next five years, because it conflicted with his own proposal to reform the National Institutes of Health. As a result,
autism advocates began inundating him with faxes and phone calls and lambasting him in the press. To advance the
cause of research, radio host Don Imus joined in and pressured Barton on the air, calling the congressman, among
other things, “a lying, fat little skunk from Texas.”

Now that the Democrats have won the House, Barton will lose his chairmanship in January and NEWSWEEK has
learned that he is attempting to pass a compromise version of the bill before then. If passed, the House bill would
fund a new push for early diagnosis, which is critical to starting therapy as soon as possible. In a particular victory for
parents, the legislation specifies that the research oversight committee should include at least one person with autism
and a parent of a child with autism.

The House bill authorizes money for research into many questions, including whether environmental factors may
trigger autism. One point of contention: the Senate bill mandated a specific amount of money for the NIH to research
the role environmental factors might play in causing autism. But Barton resisted, and now the specificity about how
much should be spent and where has been lost in the compromise version. Still, a Barton bill could come up for a vote
as early as the first week in December and the legislation, says Alison Singer, the mother of a daughter with autism
and an executive at the advocacy group Autism Speaks, “is probably the single most important thing that could
happen besides the cure.”

A win in Washington may lift their spirits, but a legislative victory won’t really change much for the Boronats and
others like them. Some kids have made dramatic progress after intensive physical and behavioral therapy; many
others still struggle with basic activities. Often, when lower-functioning young people reach 18, their parents will
establish legal guardianship to protect them. But no matter what level they’ve reached, many will need help for the
rest of their lives. Most government-sponsored educational and therapeutic services stop at the age of 21, and there
are few residential facilities and work programs geared to the needs of adults with autism. “Once they lose the
education entitlement and become adults, it’s like they fall off the face of the earth” as far as government services are
concerned, says Lee Grossman, president and CEO of the Autism Society of America, a major national-advocacy

According to the Harvard School of Public Health, it can cost about $3.2 million to care for a person with autism over a
lifetime. Caring for all persons with autism costs an estimated $35 billion per year, the same study says. Families with
limited financial resources are particularly hard hit. Other chronic diseases like diabetes are covered by insurance. But
parents of youngsters with autism “have to navigate a maze and, if they find providers, then they have to figure out
how to pay for it,” says Singer. Grossman’s early wish for the Combating Autism Act was that it would address the
dire needs of autistic adults, and he drafted 30 pages of service-related issues. But that part was never introduced
because a consortium of activists working on the bill concluded, for the sake of political expediency, that the bill
shouldn’t try to take on too much. In this light, restraint seems especially critical now, when the Iraq war has
siphoned off so much federal money. “It’s like a forest fire running through science and it burns a lot of trees down,”
says Dan Geschwind, a UCLA neurogeneticist. However, advocacy groups vow that the moment the bill passes,
government funding for adult services will become their next priority. Wright believes there is substantial
congressional support for this, possibly from Sen. Hillary Clinton.

Moving through adolescence to adulthood is never easy, but autism transforms even the most routine activities into
potential minefields. Recognizing the norms of teen behavior can be a Sisyphean task. Helen Motokane’s daughter,
Christine, 14, has Asperger’s syndrome, a high-functioning form of the disorder. She struggles to fit in at her Los
Angeles public school—and that means hiding parts of her true self. One secret: she loves Barbie. “She knows it’s not
cool to wear clothes with Barbie logos, so she tries to keep that at home,” says Helen, who gently prods her daughter
into developing more mature interests. “She says, ‘You’re trying to make me grow up, aren’t you? You want me to do
all these things right away.’ I go, ‘No, no, no.’ I reassure her that we’re not trying to push her.” But an hour or two
later, her mother says, Christine will ask, “Is it OK if I like Disney Princess even though other kids my age don’t like

Keri Bowers of Thousand Oaks, Calif., says her son, Taylor Cross, 17, seems perfectly normal at first. But sometimes
he’ll just blurt out what he’s thinking without any internal censorship. Passing a stranger on the street, he might say,
“You’re in a wheelchair!” “When you’re socially odd, people are afraid,” Bowers says. “They want to get away from you
and cross to the other side of the street.” Not surprisingly, Taylor had no friends at all in the public school he attends
until he began to meet other teens with autism—young people his mother describes as equally “quirky.”
In one way, he’s not quirky at all. “He’s attracted to girls,” Bowers says, “but he’s shy. He doesn’t really know how to
talk to them.” A few months ago, he asked out a girl from his school who does not have autism but who had been
friendly to him. Bowers had a psychologist friend shadow the couple at the movies. “Taylor only spoke about subjects
he was interested in,” Bowers says. “He wouldn’t do a reciprocal back-and-forth conversation on topics about her.”
Still, when Bowers later asked if he wanted to kiss the girl, Taylor surprised his mother with his sensitivity. “He said,
‘Yes, but she’s very religious and I would never do that’.”

As young people with autism approach adulthood, some parents can’t help but feel the huge gaps between their
child’s lives and others the same age. “It’s very hard, especially in our competitive society where people strive for
perfection,” says Chantal Sicile-Kira, whose son, Jeremy, 17, can communicate only by pointing to letters on an
alphabet board. The San Diego resident hosts “The Real World of Autism With Chantal” on the Autism One Radio
Internet station and wrote “Adolescents on the Autism Spectrum” (Penguin, 2006). Like many youngsters with autism,
Jeremy finds new environments difficult. “If he walks into a new store,” his mother says, “and there’s horrendous
fluorescent lighting, within 10 minutes I’ll look down and he’s starting to wet himself.” Despite such challenges, Sicile-
Kira plans to help Jeremy live on his own when he’s an adult—perhaps rooming with another young person with

Independent living is a major goal of many families and, with the help of therapy, thousands of youngsters who in
earlier generations would have been consigned to institutions are now going to college and looking forward to a
normal life with a job. But for every one who makes it, there are many more young people like Danny Boronat, who
has come so far and yet still faces much uncertainty. Once unable to utter a sentence, Danny now reads at a secondgrade
level, competes in the Special Olympics and willingly takes on household chores like loading the dishwasher.
But he also can spend hours playing with water. He picks obsessively at his cuticles, and sometimes cuts himself (his
mother tries to hide any scissors in the house). He has no close friends. Next year he’ll turn 21 and will no longer be
eligible for the workshop where he does simple assembly-line work three days a week. After that? No one knows, not
even his parents. “It’s terrifying,” says his mother, who started her own charity called DannysHouse to focus on

A few states like California and Connecticut, newly aware of the crisis, have launched efforts to meet adult needs. But
until programs are widely available, families are left to cobble together a patchwork of solutions—from informal day
care to hourly caretakers to private residential programs. But these are stopgap measures. Parents worry that they
will run out of money to pay for these services—and that they won’t be around forever to arrange them for their

It’s understandable that these parents would feel distraught. Many adults with autism require so much special care
that it’s hard to imagine anyone but a loving family member willing to provide it. “My wife and I are concerned about
what’s going to happen to our son when we pass on,” says Lee Jorwic, whose son Christopher, 17, is unable to speak
even though he’s been in therapy since childhood. At 6 feet 4 inches and 290 pounds, Christopher is “our gentle
giant,” his father says. But because of his disabilities, even the most routine tasks require extraordinary preparations.
Two years ago, for example, Christopher got an eye infection. He couldn’t sit still long enough for the doctor to
perform an exam so he had to go under anesthesia twice “just so the guy could look in his eye,” his father says.
Grossman says the Autism Society gets hundreds of calls every day from families like the Jorwics. “The most
distressing, most disheartening, are from parents of older kids, parents who are at the end of life,” he says. “They’ve
been fighting this all their life, and they don’t have a place for the kid after they die.”

The natural successors to parents as caretakers would be siblings. Some families feel that’s too much of a burden;
others say that’s a natural part of life in a family with autism. When one sibling has autism, the needs of so-called
neurotypical children may seem to come second. Beth Eisman of Potomac, Md., recently sent her oldest daughter,
Melanie, 18, off to college. Her goal for her younger daughter, Dana, 16, is more basic: independence. Dana’s
tantrums limited the family’s participation in Melanie’s school activities. “The old days were pretty bad,” Eisman says.
“Melanie often took the brunt of it.” Now that Melanie is gone, Dana feels the loss. Eisman says Dana often goes into
her sister’s room and says, “I want Melanie.”

Many families are sustained knowing that, by raising awareness of autism, they have already given their children the
gift of a meaningful identity. “If this was 10 years ago, my daughter’s classmates might say she’s the one who talks to
herself all the time and flaps her hands,” says Roy Richard Grinker, an anthropologist at George Washington
University and father of Isabel, 15. “But if you ask these kids in 2006 about Isabel, they say she’s the one who plays
the cello and who’s smart about animals.” Inspired by his daughter, Grinker explored autism in different cultures for
his book “Unstrange Minds: Remapping the World of Autism” (Basic Books, 2007). “The more peers of the same age
group understand about autism, the more likely they are to be kind, caring and integrate them into community life.”

Twenty years ago, that kind of acceptance was inconceivable. Autism was considered rare and few physicians
understood it or were able to help. The disorder was first identified by Leo Kanner of Johns Hopkins in 1943. About the
same time a German scientist, Hans Asperger, described a less severe form of the condition. But with the ascendancy
of psychoanalysis in the postwar years, the predominant view was that autism was a psychological disorder caused by
a lack of love from “refrigerator mothers,” a term introduced by the controversial psychologist Bruno Bettelheim. In
the 1970s, parents started pushing back against this theory and encouraging researchers to look for neurological
causes. It wasn’t until 1980 that autism became an official clinical diagnosis, separate from childhood schizophrenia or
retardation. Since that time, as scientists have learned more, they have broadened the diagnosis to include a
spectrum of disabilities. Now, they are re-evaluting it even further, considering the idea that there may be multiple

As knowledge about autism spread in the 1990s, families began to get more accurate diagnoses for children who
might in the past have been labeled mentally retarded or emotionally disturbed, and the number of cases
skyrocketed. Because of the Internet and extensive networking, parents around the country found allies and became
powerful and articulate advocates. Even longtime autism researchers say families have really led the way. “Beyond
raising awareness,” says Dr. Thomas Insel, director of the National Institute of Mental Health, “families have become
the real experts on this disorder. They have to figure out how to cope with a child who becomes explosive, disruptive,
who could have a meltdown at any moment. They become highly skilled at knowing what helps.”

Autism has set all these families on a unique journey and, while the road ahead is still unclear, they cherish small
triumphs along the way. Grinker has a Ph.D. from Harvard and, in his community, many parents dream of sending
their children to the Ivy League. He and his wife, Joyce, a psychiatrist, know that Isabel will never join them. But
raising Isabel has its own rewards. Isabel’s sister, Olivia, 13, is “like a third parent,” says Grinker. The family judges
Isabel not by the standards of others but by how far she has come. “When Isabel achieves something, I feel like we’re
a team, like we all did it, and I feel incredibly rewarded,” he says. For now, that is enough.

With Karen Springen and Mary Carmichael
URL: http://www.msnbc.msn.com/id/15792805/site/newsweek/from/ET/
© 2006 MSNBC.com